Weary from the road

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

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My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!

When it’s too dangerous: a treatment update

Killing bad bugs is serious business.  Who knows. Maybe even cancer will someday be treated the same way we go after Lyme Disease.  At least some of the fibromyalgia and multiple sclerosis approaches are starting to lean in the direction of causation by bacterial infection, parasites, and fungi.

But not all approaches are worthy of pursuit.  Most of you reading this blog know of the struggle I’ve experienced trying to eradicate Lyme Disease and some Co-Infections.  I’ve tried a variety of treatment approaches these past 1 1/2 years after extensive research, networking, and good ol’ trial and error.  Although 1 1/2 years is not a long time for the treatment of Chronic or even Late Stage Lyme Disease, I must say that I have learned a lot already!  Sadly, we are going backwards financially trying to find the best course of action.  And now an important truth became clear to me and my husband this evening from a Biblical principle:

23 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but not everything is constructive.  1 Cor 10:23

We have discovered that my most recent treatment approach is just too dangerous for me at its current intensity.  I will need to back off on the dosage of the new antibiotic regime to keep from damaging my body.  The seizure attacks of the last 36 hours, while not new to me, might even kill me if we were to continue this course.  To kill off Bartonella (a co-infection of Lyme) is considered by some, the hardest co-infection of them all.  This bacteria adapts as it escapes further into one’s tissues when in the presence of antibiotics and other approaches, making it both a super bug and a smart bug.  Unfortunately, it might be the cause of my chronic urinary tract infection and maybe even the seizure attacks.  My, my this complicates things!

We have decided to proceed with a slower yet persistent plan of attack.  The Rife machine will be on hold for awhile due to my increased sensitivity to electromagnetic frequencies when feeling sicker.  “Game on” is still our approach and we’ll take all the time outs, plays in the playbook, and “fighting Irish” I can muster to win this thing.  Steve will be home this weekend with me for my safety as we transition my care.  I’ve gotten weaker this past week and that is not good.

It is good, however, that we have hope and are one accord with the next steps.  I’ll continue on the protein/oil/vegetable diet to attempt to keep Candida down and replenish my gut flora; pushing fluids and probiotics will be critical as well.  I was dreadfully sick 1 1/2 years ago when I started on a rotation of a few antibiotics and had to stop.  Rife treatments and a host of supplements, tinctures, compounded prescriptions and Epsom salt baths followed.  At least now I think I will be able to tolerate a daily low dose of antibiotics:  the proven track record of care by the International Lyme and Associated Disease Society.  I will also continue with the mold illness treatments of which I have written previously:  VIP and Losartan.

Some things just take time I guess.  Another encouraging note:  after the wretched episodes, my mind is significantly clearer.  The improvement mimics my status pre-illness from when I contracted viral hepatitis 2 years ago.  Perhaps we are finally on to an answer after all?  Who knows.  I’ve had my hopes dashed before many times.  That’s o.k.  For tonight, or rather this morning, there’s a real indication that something is improving!

Have I mentioned how wonderful my husband Steve has been through this whole ordeal?  I am grateful for his unfailing love and tenderness that has never wavered despite the trials we have endured.  Thank you Jesus.  We are leaning on you and thank you for walking with us these days as well.

And thank you too, Gentle Reader.  :J

So where are we now?

Driving+steering+wheelWhen I wake up from a nap while travelling in the back seat of my beloved’s Dodge Magnum, I often ask, “so where are we now?”  We may have been on the road travelling for hours when I finally settle down enough to fall asleep then wake up in a daze and ask this question.  Perhaps I could sound like a kid who would go the next step and ask, “are we there yet?”  Well since I’ve already used that question for the title of another blog post, I opted to go with the first question!

So if you are a gracious reader who has been following my story of recovery from Lyme Disease, Chronic Inflammatory Response Syndrome (CIRS), and Fibromyalgia, you have read in three prior posts about some new treatment directions (reference April 29th, May 11th, and June 20th of this year).  You have also read perhaps with horror of my battle with my most noxious complication of illness:  seizure attacks and all of its variants.  After 16 months since the “neuromuscular events” began, I have some good news for you:  beginning two days ago, the pattern of seizure attacks has started to change!  Hallelujah!  Hallelujah!  Hallelujah!

What prompted the new direction?  It appears that I’m close to landing on:  1) just the right dose of Losartan (an off-label application which has lowered TGF beta-1 levels and chest-compression pain) and 2) VIP (vasoactive intestinal peptide for CIRS which causes me to react negatively to most intense sensory stimuli in any form).  Additionally, a fifth type of antibiotic taken in the past 7 months is reducing the symptoms of a urinary tract infection within a matter of hours after taking it; nothing else has come that close, a la natural or by prescription.  While I am also still feeling spacey, sick, low level headaches, aches and pains, ringing in my ears and a host of other symptoms, the bottom line is that I am starting to get better!  The violence and frequency of the seizure attacks/pre-tics/tic attacks is coming down.  Praise the Lord!

I wouldn’t write about these things if it didn’t feel real to me.  I have had false hope many times before only to have my hopes dashed with more sickness.  Still I have kept the faith and persisted with the strength the Lord has provided; to Him be the glory if any good has come from this blog.  It’s time now to acknowledge that it is too early in this new direction to say any more than I already have written here.  So now I will end this post.

For today, please join me in being encouraged that after 16 months of hellish suffering, some relief has come.  I wish I could hug you out there for standing by me.  Thank you.  Just Julie

Hanging in There!

efu-hanging cat with dogOne more day and I will be free of this 29-day round of antibiotics.  A short course of candida treatment (6 days) begins after that and I’ll see what’s left of me when I’m done!  On this day, I am grateful for:

  • My beloved Steve whose faith in the Lord and faith in me never falters.  He is a precious gift in my life.
  • Precious friends within the Lyme community who “get it” as we walk through this journey together.
  • Our loyal Elle whose brown puppy dog eyes have met mine, melted me, and comforted me in the wee hours of many late nights.
  • A brilliant Lyme and Mold-Literate Doctor.
  • A lovely home with the time and space I need to recover.
  • And deepest of all is the indwelling presence of God through His Holy Spirit Who speaks truth into my life, covering the lies and fears.  Thank you Jesus!